I hope this email finds you super well and safe, during these times!
I would like to nominate my mother, Angela Roberts for the Angela’s Angel Award
I was born, with Junctional EB in 1993 in South Africa. My parents already had a happy and bouncy 4 year old girl and had also taken in and fostered a little 4 year old African boy. As always, EB came as a big shock to my parents (as is for most other families too), but they quickly set into operation mode to make things work. My father took on as many jobs as he could to financially provide for our family and my mother dropped absolutely everything to care for me full time. She left her career and stayed home with me 24/7 to make sure I was as comfortable as possible. Medical professionals told my parents I would not live to see my first birthday and that they should cherish every moment they have with me.
There was no internet back then, so my mother set off to find other EB families via
the radio, television segments and by simple handwritten letters. We had very little
information in South Africa and zero medical or financial assistance from the government. Every now and again she would make contact with a fellow family, they would exchange ideas and she would support them in any way possible. As a young tot, I remember my mom meeting with quite a few families overall. This eventually led her to lead a group of EB families in a support group at the local
children’s hospital. I remember there was one child with EB who lived in a children’s home. Every couple of weekends, my mother would fetch her to spend the day with us.
Before I was born, my mother worked in television. While she stayed at home to care for me and my siblings (mostly alone, as my father was all over the country, working very hard), she studied teaching part-time in the evenings, once we were all fast asleep.
This was because she wanted to become a teacher so that she could be close to me when my school-attending years started. In these years she also started Friends of Debra, which was what you were called then if you started a Debra outside of the UK. My parents appeared on about 7 television programs to try to reach out to families in South Africa and to let any EB families know about the support they were offering.
In my first year of school, my mother and the support team at the school planned a very sweet little EB info presentation. Where my mom and I spoke to the class and had a little ‘popping party’ where we showed my EB and how we managed it.
The aim was to show the little Grade 1s exactly what I was dealing with and to educate them and their parents. It turned out extremely successfully and this was the course we followed whenever I entered a new environment. As the years have gone by my mom has continued to stay involved and active within the EB community in South Africa and abroad. What is quite common in EB is for families to be active and involved when their little ones are small, and when their EB is under control they tend to not be too involved with the EB community.
This is not the case with my mom. Even though we’ve had a great hand at my EB since I was much younger, she has continued to pour her efforts into new EB families, without ceasing. You can often find her at the local hospital with a flask of coffee and a home made meal for mothers who are supporting their new born babies. I am 27 years old this year and my mother and I are nowhere near stopping being involved in the EB community. We have a wonderful DEBRA South Africa group and have continued to travel overseas to keep up to date with the latest information and discoveries.
My mom is involved in two clinical practice guideline groups with DEBRA International (namely Transitions and Physiotherapy). We have attended the Canadian GlobalSkin Conference for the past 2 conferences in France and Italy and have recently attended the EB 2020 Congress this year in London (where my mom was involved in meeting after meeting with her involvement with Debra). She also participated in the RareDerm Forum with GlobalSkin last year. As well as the Dermatology Congresses of South Africa over the years, educating more of our dermatologists about EB and letting them know that our support group exists.
Due to COVID, I have lost significant funding to reconstruct my mouth and teeth with experienced EB dental professionals in Valencia Spain, as my Junctional EB affects my mouth drastically. Next month my mother will be flying to the UK to work as a carer to earn extra money to pay for the gaps in my reconstructive work that we cannot afford.
She is the epitome of selfless and humble, always thinking of others and willing to give the shirt off of her back to assist the next person. In South Africa we have a large divide between the have and have-nots and my mother has always been dedicated to helping others, whether it be starting soup kitchens all over or reading to and giving educational resources to little children who’ve rung our doorbells.
She is the type of behind-the-scenes giver, who has left a busy birthday celebration to take all her left over birthday eats and birthday cake to sit with her soup kitchen women and children and share her birthday with them. It would be the loveliest loveliest gesture if she won this award. It would give her the biggest boost for her venture to the UK to try to earn a bit of extra money towards my EB medical costs. I have attached a few photos to show the light and the angel inside of my Angela 🙂
Thank you for reading this, I hope you have the best time reading about all the EB caregiver warriors!
What a good dose of positive reading for you after such a turbulent year.
My siblings went on camps every summer and in order for me to attend my mom volunteered as ‘camp mom’ every single summer. So she came on camp with us and
helped all the other children
And when my EB was very bad my mom didn’t want me to spend the whole day fixing my body so she sent her alarm and woke up in the middle of the night to sort my skin out while I was sleeping. If it hurt and woke me up then she would say “Shhh go back to sleep, everything’s ok, it’s only the blister fairy”
My dad worked so much, she had an adopted child, an ADHD child and an EB child.
Plus she studied in the evenings when we were all in bed and was the blister fairy in
the middle of the night when my EB was terrible
Ok #momappreciationrant over now